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Author Topic: New Poz - Unusual Numbers - ideas?  (Read 2803 times)

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Offline SteveS

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New Poz - Unusual Numbers - ideas?
« on: May 27, 2013, 03:07:28 AM »
Thanks for reading this. I tested positive 10 days ago. I had tested negative 6 months prior to that, and the only incident I can imagine to get the infection was about 4 weeks before testing positive. So, the Doc told me to expect an extremely high viral load (hundreds of thousands if not millions), and a low CD4 number. When the labs came back, my CD4 was around 1000, and my viral load was less than 400. The nurse handling me that day said she has done ONLY HIV nursing for 26 years and the numbers were "extremely atypical". Basically - they make no sense for a new infection, which again, the OLDEST it possibly could be would be 6 months, but really with no risky behaviour, so the only incident i can imagine getting infected by was 4 weeks before testing poz. Any comments on this? What could it mean? Thanks in advance. This is all very new and confusing. Also - I am on Atripla. Any comments on that? So far I have not had an significant side effects, for which I am grateful.

Online mecch

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Re: New Poz - Unusual Numbers - ideas?
« Reply #1 on: May 27, 2013, 11:40:53 AM »
Well, did you ask the doctor what it means?  Do you want to think backwards about the meaning?  Or forward?  Or both?

Anyway, welcome to the forum, first of all.

Secondly, you got terrific numbers - take strength in that - surely it will fight back any shock you had from the diagnosis.

Also, congrats on dealing well with starting HAART, and no side effects. 

Clearly you're getting the V.I.P. experience all around.  Count your lucky stars.

As for the "wondering".   Let me ask - the blood that showed these numbers, was it drawn from you, before or after you started the Atripla? If you had already been on the Atripla, even a short time, it might contribute to the result.

But, those are great numbers regardless.  A strong immune response. 

I don't know how rarely atypical it is.  It's atypical, sure.  I had a friend who had NASTY seroconversion, but just a few weeks later, he was in your territory, with low viral load and high CD4.  Anyway, after a few months it was clear he was NOT a long-term non-progressor.  But he always had a strong immune response. 

Maybe that is what you are wondering about - for the future?  Actually the question is moot -- since you already started HAART, how long you might avoid HAART is no longer pertinent....  ;D

I bet you'll be undetectable lickity split and have a healthy life despite being HIV+.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline SteveS

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Re: New Poz - Unusual Numbers - ideas?
« Reply #2 on: May 28, 2013, 02:59:38 AM »
Thank you so very much for answering. Really. It means alot. I don't really have anyone to talk to about this and so I appreciate it very much. No, I was not on Atripla or anything when the blood was drawn, so that was just the natural state of the numbers. It would be nice to hope that I might be a non-progressor. I go in this week to find more about the "genome" ? type etc. The doc / nurse didn't really know what to think, they were just very surprised because again, even at its longest possible window, it would still be a very "new" infection, so they expected very high bad numbers, low good ones. You are right - I should just be happy about it and I am. I am also hopeful that the good numbers taken with the very early treatment might be hopeful long term when you read about these people who are able to move towards a functional cure. But for now, as CRAZY as this sounds, this has not been as hellish as I feared. I realize I am very early into it and maybe the hell comes later, I don't know. But I really have basically no side effects, and I am so motivated now that my exercise / healthy eating / supplement regimen has become spectacular - what I always wished it would be but never had "time" for before. It is strange. There are silver linings. Thanks again for replying. May I ask - how long have you been positive?

Online mecch

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Re: New Poz - Unusual Numbers - ideas?
« Reply #3 on: May 28, 2013, 06:11:01 PM »
2008.  Rotten seroconversion, piss poor immune response, quickly on HAART and quickly on the mends.

Whether you could have been a non-progressor is no longer relevant because you started HAART - Atripla. 

I don't know what "hell" you are wondering might come later on..   Generally the prognosis is good!

You might have emotional/psychological fallout, but who knows.  You might have a challenge dealing with society's stigma and discrimination, but then again, you might not.

Yes, there can be some silver linings...

Finally, please be careful to avoid taking too many "supplement" pills...
Would you care to mention what you are taking?
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline tednlou2

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Re: New Poz - Unusual Numbers - ideas?
« Reply #4 on: May 28, 2013, 11:38:38 PM »
Steve,

Nice to meet you.

Did you start meds with just one set of numbers?  Since you just recently experienced this, I am also curious what the adherence conversation was like?  With the guidelines now saying starting everyone regardless of counts, I have wondered how many docs are just handing scripts to patients, as if it was penicillin, without having a good discussion.  Or, did you get a good conversation about the need to be adherent, with your doc knowing you had financial access, stable home?, no substance abuse issues, or managed mental health, if applicable?   

Ted

Offline rayman11

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Re: New Poz - Unusual Numbers - ideas?
« Reply #5 on: May 29, 2013, 03:10:46 AM »
Steve,

I dont know how valid is this study been done in France.

http://www.cbsnews.com/8301-204_162-57574611/functional-cure-of-hiv-reported-in-14-patients-french-scientists-say/

If you are certainly a new infection (few weeks old) and you might wanna try something what they did in France. They hit the virus with ARV treatment during seroconversion and they found that there was no virus re bounce in some patience after stopping treatment. it means that some patient was cured, because virus never get a chance to invade resorvious like lymp system etc. talk to your doc about it.
wish you well!

Offline SteveS

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Re: New Poz - Unusual Numbers - ideas?
« Reply #6 on: May 29, 2013, 10:17:39 PM »
Thank you all VERY much. I am not sure exactly how these forums work yet, so I will answer all the questions in one post, rather than replying individually. I hope that is how it goes.

As to the questions of Dr describing adherence, etc, a few reflections. One thing that surprised me a bit is that he did not wait for the "geno" study to come back first before putting me on Atripla. If I have a strain that doesn't deal well with that, wasn't that not a good thing to do? On the other hand, there WAS discussion of the French Visconti trials and since I am very very confident that my infection was a matter of weeks old and my numbers WITHOUT meds were abnormally good, I guess that is why he thought, let's get him on something right away.

There was not discussion of adherence at all, but, in the Docs defense, I am very obsessive and went in to the very first meeting with a host of research / questions / discussion points that I think demonstrated to him that he knew I understood the absolute need for adherence. Still, I do find it odd that there was literally no discussion of it at all.

I am on a LOT of supplements, which I want to discuss with the HIV med specific pharmacist this group uses as soon as I can. I am on probably 20 pills a day - but always have been. Omega 3, zinc, selenium, multi vitamin, coconut oil, garlic, CQ10, probiotic, Vit B Complex, Vit D3....those are the ones that come quickly to my mind.

HOnestly - before this, I had a terrible time being consistent in exercise, I ate a LOT of carbs and sugars, and did not get proper rest. This has changed all of that. It is like it instantly brought the discipline I needed in these areas. So - I am feeling well. Running about 20 miles a week. Losing weight. Getting 8 hours a night, etc.

My biggest - HUGE - fear right now is anal cancer, since I was diagnosed with HPV and two small anal warts as well. I am freaking out about that, because some of these sites do tend to make you obsess. I am awaiting the results of an anal pap smear, but they say it will take SIX WEEKS to get results.

Thank you again for your responses. They are more help than you realize.

Online mecch

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Re: New Poz - Unusual Numbers - ideas?
« Reply #7 on: May 30, 2013, 08:22:01 AM »
You had better see that pharmacist with a clear list of all the supplements you take. There are supplements that clearly interact with misc. antivirals.

Also, is their any consideration of the price of maintaining all this supplementation?

Defining a "right track" as per diet, exercise, sleep and supplements - obviously this is important for any person in maintaining health.  However, it is very important not to project unfounded weight onto these activities.  A diagnosis makes many a person incredibly anxious about health and longevity.  (Anxiety invites obsessive response..., in those who are obsessive.)  And its easy to project that somehow the "right track" is essential for a healthy HIV+ life.   

In fact, Bravo for the early haart, and that you're going to stay adherent. That's the necessary way to fight an HIV infection.

I have obsessive tendencies.  Runs in my family. I see a lot of obsessive tendencies in this forum. It is what it is.  So take it as non-jugemental that you'll want to be chill about the importance of "right track".  I mean its fine, as long as it doesn't weigh you down and ADD anxiety to an anxious period of life. 

Exercise great. Losing weight great.  But don't judge yourself if eventually you can't manage the long list of things you "must do" everyday, cause the thing you must do everyday for HIV is only pop the HAART pill.  With time, there may require other adjustments.  Proceed calmly.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline CallMeSid

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Re: New Poz - Unusual Numbers - ideas?
« Reply #8 on: June 07, 2013, 08:29:12 PM »
Hi, Steve S.

Just saw your post from last month and wanted to reply.  My numbers at the time of dx were similar to yours -- high/normal CD4s and low VL.  I wasn't sure of the exact timing of my exposure, but had tested HIV-negative about a year prior. 

I had several similar CD4/VL results in the year or two following dx.  By some definitions, I could be considered a "viremic controller".  Did not have any genetic resistance testing done.  Have not been on meds.

Just wanted to chime in as somebody who had similar numbers to yours at dx. 

Best to you,

Sid
07/2006 HIV-negative
06/2007 HIV-positive
07/2007 CD4: 795 (40%), VL: <50
09/2007 CD4: 629 (43%), VL: 895  (~2 weeks after measles/mumps/rubella booster)
12/2007 CD4: 854 (45%), VL: <50
03/2008 CD4: 880 (45%), VL: 151
12/2008 CD4: 943 (46%), VL: 116
05/2009 CD4: 865 (44%)  VL: 107

Offline CallMeSid

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Re: New Poz - Unusual Numbers - ideas?
« Reply #9 on: June 07, 2013, 08:34:36 PM »
Oh, forgot to add:  Anal cancer is RARE, even among those HIV-positive folks with HPV infection.  Only certain strains of HPV are associated with anal cancer and even amongst those with those oncogenic strains, it is rare.  And when it does develop, it's often DECADES after exposure.  Pap smears and high resolution anoscopy are sometimes used for regular screening for those deemed at-risk. 

Hang in there.
07/2006 HIV-negative
06/2007 HIV-positive
07/2007 CD4: 795 (40%), VL: <50
09/2007 CD4: 629 (43%), VL: 895  (~2 weeks after measles/mumps/rubella booster)
12/2007 CD4: 854 (45%), VL: <50
03/2008 CD4: 880 (45%), VL: 151
12/2008 CD4: 943 (46%), VL: 116
05/2009 CD4: 865 (44%)  VL: 107

Offline SteveS

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Re: New Poz - Unusual Numbers - ideas?
« Reply #10 on: June 08, 2013, 01:09:01 PM »
Sid / Anyone else -

Thanks so much. Every comment is really a help, both emotionally as well as informationally.

Sid - I guess I am somewhat conflicted. You seem to STILL not be on meds - and some say the doc should not have so quickly put me on with such good numbers. My infection could ONLY have been within 6 months, and almost for sure was only 6 weeks. However, so many other things are pointing strongly to putting immediately on meds for the preservation of the immune system and perhaps even longer term hope for functional cure. It seems there are two schools of thought on it, but of course, in the moment, just being diagnosed, I did what the Doc recommended.

I am on Atripla and actually did really well the first two weeks, but this third week have been very very fatigued. I am hoping it will pass.

I realize I was overreacting on the anal cancer. I am awaiting PAP smear results, but again, many have told me it is a very slow developing cancer and extremely treatable even if they do find something.

Any other comments are greatly appreciated.

Online mecch

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Re: New Poz - Unusual Numbers - ideas?
« Reply #11 on: June 08, 2013, 06:09:54 PM »
If the Atripla doesn't work out, there are plenty of other combinations... 
Take a deep breath, HIV diagnosis is a shock.
I'm sure as the months roll on, you'll have more information from your Doc and who knows....
Treatment at diagnosis has many possible benefits.
Furthermore, treatment will also put you into undetectable, which also can be a good place to be both for your own health and for the health of your partners. There are possibilities that open up again, emotionally and in partnerships, when you know you are highly unlikely to transmit this virus.
Also, things are moving very very rapidly this past year, it seems, on treatment. And all these indications about possible benefits of very early treatments.
So who knows, maybe in a few years, you might have an opportunity to take a treatment break, or be done with it.
And also, who knows where treatment will be in 5 years... 
Treatment isn't poison.  Atripla might not be the drug, so you can change it.
Now that you are on HAART, there are more important fish to fry, looking forward, to staying healthy.  Your HIV is under control, so take confidence and comfort in that.
“From each, according to his ability; to each, according to his need” 1875 K Marx

 


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